Trying to figure out what is going on with me

[susiestar]

Hi all.

I need help. I had the surgery in Dec. My throat is still having problems, part of it seems to go dead, won't swallow or let anything past. I end up gagging a lot. Also vomiting a LOT.

Near constant migraines, with 4-6 hour breaks from the imitrex. It was here for a week, went away for 2 days, and hten came back and is still here.

I am incredibly dizzy for the last 3 days. Can't stand today, I keep hitting the wall when I think I am standing straight up. Very annoying. I don't DARE drive. I am trying to figure out how to shower. Maybe sitting down is the way.

Spine doctor says all is well, bye bye.

Rheumy says fibro is MUCh worse and arthritis is some of the worst he has seen - and his patients are usually decades older than me. He says try humira again, keep on it. It should help.. If it doesn't, we will see in 3 months.

REg doctor says rheumy is the one to see, keep taking my medications.

medications so far provide a little, make that very little relief. They do make it so that any doctor will have to give me a LOT of medication to deal with anything else.

Any ideas here? I am stumped. Totally out of ideas. Feeling too crappy to have any new ones.

Susie

 

[flutterbee]

http://rheumatology.oxfordjournals.org/cgi/content/full/40/5/593

http://www.cja-jca.org/cgi/content/full/49/7/729

http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm


Just some thoughts.

I'm still pretty out of it. I'll research more later.

(((hugs)))

 

[tiredmommy]

Have you had a swallow test?

 

[Jena]

hi

i'm so sorry to hear you are suffering like this. i'm not familiar with any of this stuff but i can go on web now and see what i can dig up also if it'll help.

ugh is all i can say that's gotta be horrible trying to function through the day for you i'm so sorry

(((Jen)))

 

[Jena]

ok i totally stink tonight all i've got so far is avoid cold drinks or food keep it warm to avoid the gagging and throwing up that she help.

 

[hearts and roses]

Could you have an inner ear infection. I know it sounds too simple, but many people have your symptoms without ear pain and it's an inner ear infection. My sister had severe throat pain and extreme dizziness - vertigo - and on a hunch, our allergist treated it as an inner ear infection and things cleared up. Just thought I'd throw that out there. Hugs, I hope you feel better.

 

[flutterbee]

Here's another one on neuropathy that's easier to read.

http://www.nlm.nih.gov/medlineplus/ency/article/000593.htm

 

[Big Bad Kitty]

Aw honey. I wish I had some wonderful, magical answers. You have always been so helpful to me. Prayers to ease your suffering. I am so, so sorry.

(((BIG HUGS)))

 

[dreamer]

any posibility you had a mini stroke dureing or immediately after surgery? (it is not uncommon)
Possible a mini stroke affected swallowing and balance parts of brain?

 

[Josie]

Have you looked into Lyme Disease? Not just had your doctor tell you it wasn't Lyme Disease. To really rule it out, you need to go to an LLMD (Lyme Literate MD).

It is common for people with Lyme Disease to have been to many doctors for many years without any real answers or help. One of my daughter's main symptoms was constant headaches uncontrolled by her migraine medicine. Her first Lyme doctor used to be a doctor specializing in CFS and fibro and then discovered that 90% of his fibro patients tested positive for Lyme when he used the preferred lab for Lyme. Arthritis is a known Lyme symtom. Dizziness is a symptom.

Here is a checklist of symptoms. www.canlyme.com Click on symptoms on the left and then scroll down.

These LLMD's are considered alternative. People go to them when they have exhausted all of the mainstream options. My daughter's LLMD says 97% of his patients improve.

 

[dreamer]

chronic low grade infection due to reduced immune system function post surgey? medication side effect/adverse reaction?

 

[DammitJanet]

Susie I can relate. My fibro has kicked up a few notches and my arthritis is simply killing me right now. I have yet to convince anyone to try me on the enbrel or humera though. I dont have trouble swallowing but am having the nausea, headaches for days and days on end, and some dizziness where I bump into things. So far all they have done for me is to up my flexeril and change the topamax to zonogran. I live on hydrocodone and advil.

 

[susiestar]

Janet, I am right there except no advil. Can't tolerate ANY NSAID. Rash and can't breath type can't tolerate.

Been checked and treated for inner ear, not that. I have had this dizziness off and on most of my life. Testing has always said everything is fine. Even specialized docs say, take it easy, rest, it will pass.

Well, dang it, I want it to be past NOW. I have had 4 days of the dizziness. Everythign spins no matter what I do. Sit, stand, lie down, whirl whirl whirl. I swear I am one of those things you stick in the garden!

I can't stand the heat - have a window open and hte heat vent shut off. I get so sick to my stomach when I get hot. I was tested for lyme and the test showed nothing. Several times inthe last 2 years we have tested for lyme, using different labs. NOTHING shows up.

I have 2 more months before we know if the humira will work. I NEED to be able to do things - not fair to husband or the kids to have me flat out all the time. The surgery was supposed to help, dang it.

I have no clue if I had a mini stroke. None of the docs have addressed htis. Will try to get another appointment this week.

I have a taxi gift card from my mom, thank heavens. It will let me get to the doctor and back.

Susie

 

[DammitJanet]

Im having awful ear problems right now too. Well...since before Thanksgiving actually. I went to one of those Urgent Care places back then and they said I had an ear infection...put me on antibiotics and a steroid. They even tested my ear with this weird machine that printed out how I hear. One ear was really bad.

Problem is that ear has never gotten better even though there is no pain. It feels like my ears need to pop but they dont. Once in a blue moon sudafed will help but not normally. My GP swears there is nothing showing when he checks my ears...lol.

Personally I think my headaches come from sleeping in a really bad bed. I need a new one badly because the box spring is broken.

 

[Josie]

The Lyme test that most Lyme patients believe is accurate is IGeneX. My daughter had a negative regular Lyme test and a positive IGeneX test. I called them and ordered the test kit and took it to the doctor to ask him to order it. I had to pay $190 out of pocket and submit it to insurance myself.

I have read that LLMD's will look for another diagnosis if there isn't a positive Lyme test. They are willing to diagnose Lyme clinically without a positive test because there isn't a good test yet. The IGeneX test only detects 80% of it, I think.

Even if you don't have Lyme, an LLMD might be able to help you figure out what is going on. Even with her postive test, my daughter's LLMD ordered an MRI to see if there was something besides Lyme causing her headaches. Her neurologist didn't order one. He relied on the one that was 3 years old.

 

[dreamer]

Hmmm, easy child has been complaining of her ears for a month, and docs keep saying nothing is wrong. Plus she has been haveing nasty headaches all along, since christmas, too. and hot flashes.
In jan I was sluggish, I blamed post holidya let down, but.....I did not bounce back. Then doctor reduced my prednisone, (but not my humira or methotrexate) and WHOOSH....my illness came back hard and fast! even tho the pred reduction was small. BUT at the same time....they found out it is now attacking my liver, and my eyes..so------I have NO clue whats up or down, whats going on, all I DO know is springtime seems to always be worst for me, followed by autumn......winter and summer usually settle down some in my body.

I know my mom had a stroke post surgery when she was still on surgical floor. It was quite obbvious when it happened, I was there......GRRR darned docs...GRRRR and double grrrrr.
The surgeon simply kept repeating "the surgery went well" Yeah OK the part of her that you operated on and the procedure itself, the procedure in the OR dureing THAT small time span went OK but, what about NOW? Well, the God like specialist, he could not come down from his Heaven to SEE the other consequences, ramifications, results on her WHOLE body of his surgery. The spot HE touched so intimately for his surgery did what was expected -thats as far as he could see. The hospital nurses simply shrugged and passed it off, talk to doctor, not me. The GP passed the buck, what does specialist say? As time went on it became more and more obvious that my mom absolutely DID have a stroke, altho a small one.....but all along, the professionals were non committal......some saying well, maybe she was like that before the surgery, some implying it was her malingering, some suggesting it was a medication reaction or our imagination.....but I was with her when it occured. and I KNOW what it was and exactly when it happened and at that time, yes, her body did show the classic signs and symptoms. BUT a mini stroke is not like ..um...say a fall, with an obvious right now here it is injury.it is more ambigguous, more vague, and if it occurs when noone is paying strict attention- it can be missed. and later it can be very difficult to ascertain exactly when it did occur.
Especially depending on what was expected of your body post surgery...(some of the symptoms can be passed off as what was expected for your surgery recovery ummmm like weakness? or slurred speech post anethesia? stuff like that?) and what part of brain was affected..and how severe (or not severe) the mini stroke was.

 

[mrscatinthehat]

Sorry this is not get any better. I really don't have advice to give as when I suffered with that stuff I discovered a lot of it was stress induced and divorcing a very bad husband (not what I am reccommending for you) helped. As the stress went down so did the symptoms. Now I know that may not help you but have things been elavated stress wise (I know what a question when we have difficult children) more than usual.

Not saying that is what it is but just another shot in the dark.

Hugs,
Beth

 

[witzend]

Has your doctor looked at Miniere's disease? It fits with the dizziness and vomiting.

 

[Marguerite]

That degree of dizziness can have a number of causes and is likely to cause vomiting purely from the 'motion sickness' it induces. But Meniere's is worth checking out.

Also - I posted elsewhere on sandman3's thread on vertigo, about "benign positional nystagmus". It's easy to treat, can happen anyway especially when you're not as young as you used to be and under other circumstances. You can have it for years and years, or sometimes only a few days - but unless you do something about it, you can be stuck with it.
Have a look at what I wrote, then if you DO have BPV, grab a vibrator and go see your friendly neurologist (or GP with a brain and prepared to help).

Now I've piqued your curiosity, haven't I?

Marg

 

[ML]

Everyone has some good thoughts. Nowadays, to a large extent, we have to take responsiblity into our own hands for our healthcare. While docs get to practice, we have to get it right. Don't give up! Try these different tests and research these possibilities until you find the right treatment. Where is House when you need him? Gentle hugs ML